Help i need answers

hi there,
i am at my wits end. my 12 weeks old son nate has been to hell and back. he was born with only half the blood volume he should have and spent 2 weeks at the royal children's hospital (they still have no answer to why this may have happened) his apgar scores where 3 and 7. he had a brain scan, a tummy scan and a lumbar puncture which all came back ok. he is still very aenimic. Since being home we have changed formula 5 times, because he was screaming all the time. he is now on pepti-junior as the paed suspects he has a dairy/soy allergy. we also had him on zantac for reflux which did nothing, so they changed it to losec. the last 2 weeks he has been worse than ever, sometimes screaming up to 9 hours at a time, with no sleep and no feeding.
he is a really spewy baby also. we have been to a sleep school and they confirmed that there is something medically wrong, but no one is giving me answers. his blood levels are still all over the place (we have fortnightly blood tests) we are seeing an osteopath tonight and a natropath Tuesday, and a new paed for a second opinion wed.
could the reflux still be bothering him even though he is on losec and pepti-junior, or do you think it would be something more? the cry that he has sounds so painful it breaks my heart. i just don't know what else to do or try.

Hi there

What a hard time Nate has had, I hope things will start to improve for you both really soon, and they figure out what’s going on with him. Let’s see if we can give you some ideas which could help also.

The short answer to your question is that yes, reflux can still definitely be part of the problem.
It often involves a lot of trial and error to find what works best, and that can take time!

Are you seeing a paed gastro or are you seeing a general paed? A paed gastro specialises in the reflux side of things and with the digestive tract. Has Nate had an endoscopy or pH study done, to help work out what is going on?

A lot of babies / children with reflux are intolerant to both dairy and soy. Formulas like Pepti-Junior are formulas which are still cows milk based, but the cows milk proteins have been broken down quite extensively, so that the body often doesn’t recognise them. Lets hope that Nate can tolerate Pepti -Junior and things start to settle down for you. It could take a couple of weeks to see any difference, as the gut and oesophagus starts to heal. When did he start on it?

For children who can not tolerate these types of formulas there are others e.g. Neocate and Elecare, which are based on amino acids, and the proteins are completely broken down. They are bitter too, but there are tricks to help them accept it, if that is an issue.

How long has he been on Losec? The length of time Losec or any other medication takes to start taking effect can differ from child to child. It can take from one week to several weeks, depending on factors such as if there is any inflammation and how quickly it gets into their system. If it isn’t effective enough, then they may be able to try different doses or medications, so there are lots of different options that way too. Sometimes it isn’t the best drug for some bubs, but other times, it can work wonderfully.

Have you thought about raising the head of the cot and change table. Keeping his head raised may also help. Also keeping him upright after a feed for 30 minutes could also help with making him feel more comfortable. Thickeners may also help, especially for vomity babies, and they can also be given before or after a feed, so that may be something worth discussing with your doctor too. A lot of refluxers seem to like to suck, so if you are comfortable with the idea, you could perhaps offer him a dummy too; Nate may find this comforting as it does seem to help a lot of babies with reflux.

Another way some babies find comfort is to be in a baby harness / sling and being strapped against their mother’s chest. They are upright and they find it soothing to be there, and listening to her heart beat, and the mum then can have her hands free to do things if they wish or to just sit down and relax for a bit.

You could start a diary on his behaviour, how much he is drinking, wet nappies / dirty nappies, anything and everything, maybe this could help a doctor pin point what is happening to Nate. When you see the new paed, it may help to sit down and write everything down from the pregnancy / birth to now. No matter how small or trivial you think it may be, it just might be the information which could help. Take everything with you all xrays, scans reports, I have a file with everything in it, filed in order of when we see the and the proteins are completely broken down paeds/ doctors, this way the doctors can get an idea of everything that has been happening.

Please remember to trust your instincts, and do what feels right in conjunction with your doctor's guidance. You are doing a fantastic job. I hope you are getting support and lots of help as it sounds like things are really tough for you all. Don't forget if it all gets too much, to let your doctors know. Sometimes admission to hospital can be arranged, just to give the mum a break, so that may always be an option. You don't have to do it on your own!

Good luck, I really hope things improve for you. Have you ever thought of joining a support group, maybe talking to people who have had similar experience (with the reflux at least) could give you some answers and ideas on how to help Nate. I hope you can find some answers for his other issues too, or figure out if they are somehow linked.

Regards
Marie
Reflux Infant Support Association

Note: This information is general in nature and should not replace the advice or care of your doctor.